This communication disability is called selective mutism. It’s really an unfortunate term for the condition because the word “selective” sounds like a choice. It’s not a choice. There are times when she cannot force words to come out of her mouth.
I haven’t talked a lot about my daughter lately, and especially not about her mental health issues. I’m very careful about violating her privacy, especially since she reached the teen years. But this time, she came to me and asked me to write about this issue, and her experience.
“Most of the time,” she said, “It would be easier for me to just speak than it is to deal with people who get mad when I don’t talk to them. I don’t want to be mute.” Teachers, principals, even friends get angry with her when she doesn’t respond to them with spoken words.
Old friends she hadn’t seen for a while insist they know she can talk and get irritated with her silence, often even assuming that she is mad at them, or even that she thinks she’s too good to talk to them.
So, what is Selective Mutism?
Selective mutism is a rare disorder, a communication disability, affecting less than 1% of kids. It is related to anxiety disorders, and often co-occurs with autism and hyperlexia. There really isn’t a lot of information on this condition, but it is one in which an intense anxiety reaction causes a freeze response and prevents the individual from speaking aloud. Sometimes this situation can prevent communicating altogether, but more often sign language, gestures, and writing can be used to respond.
This becomes especially problematic when others become angry and demand a verbal response, which amps up the anxiety even more and makes the problem worse. Traumatizing someone for having anxiety wont reduce their anxiety.
How can I help?
Interacting with someone experiencing selective mutism can be very much like interacting with someone with a stutter. The most helpful thing you can do is to exercise patience. It can be frustrating, I know. It’s very difficult to remain calm while you’re waiting for a response, but the more demanding you are, the more frustration you demonstrate, the more you behave as though they’re being defiant, the worse the situation gets. Allow them to respond on their own terms and you’ll actually get more information than if you demand that they speak.
Pay attention to their non-verbal behavior.
If you think you understand but you’re not sure, you can ask. “I think you’re saying you want to go home. Is that right?” Then they can nod or shake their head in response. Based on that response, you can ask more questions.
If you have writing implements available, you can offer those. My daughter keeps a pad of sticky notes and a pen with her at all times. When people allow her to respond that way, they get the most complete and accurate response.
Share this story. The more people understand what selective mutism is, and how they can help (or at least not make the situation worse), the more it makes the world a little kinder and helps people living with this condition.
The simple act of being aware of selective mutism and understanding that this communication disability is not a choice, makes a difference, even if you do nothing else.
The first thing I thought when I was diagnosed with breast cancer was what’s going to happen to my baby? I’m not alone in that thought, I’ve discussed the topic at length with my friends who are also juggling child rearing with cancer treatment.
And it does impact the kids, but there are ways to help our kids cope with a parent’s cancer.
Interview with a Social Worker
Michelle Massey runs the Camp Sparkle and Small Talk programs at Gilda’s Club in Seattle. [Updated to note that the former Gilda’s Club in Seattle is now operating independently- although maintaining the same mission – and goes by the name Cancer Pathways.] She is a Licensed Clinical Social Worker and a Board Certified Oncology Social Worker. She got her start at Children’s Hospital working with kids with cancer, where she started to notice that the siblings needed some attention, too. Now her work focuses on the children of cancer patients.
We sat down at her kitchen table to discuss how kids are impacted by their parent’s cancer, and what we can do to help. She was very clear in making the point that if a parent has cancer, the kids are affected. They might not show it. They might be perfect little angels because they don’t want to be a burden, but that doesn’t mean that they are not affected.
Kids are by nature ego-centric.
There is nothing wrong with this, it is part of our developmental process, and hopefully, we grow out of that perspective. But it’s important to remember the eco-centric perspective when working with children who are dealing with their parent’s cancer. When they think the world revolves around them, then they naturally think they have an impact on everything that happens. That means when a parent gets cancer, they think it has something to do with them. It’s the same reason kids think it’s their fault if their parent’s get a divorce.
The ego-centric perspective also means that the child’s biggest concern is “what is going to happen to me?” They are concerned about the well-being of their parent, but even more so, they want to know that whatever happens, someone is going to know that they like their peanut butter and jelly sandwich cut into triangles, and which songs to sing as they tuck them in at night. Fear of abandonment is a normal reaction to this situation.
It is important to understand that a child’s anxiety around a parent’s cancer is an appropriate reaction, and not a sign of mental illness. Counseling and group therapy sessions can help kids develop the tools they need to weather the ups and downs of their parent’s cancer treatment. Additionally, this is not likely to be the last challenge in the child’s life, so the tools learned in counseling will be of lifelong benefit.
Group activities that involve other kids whose parents have cancer is also beneficial in that it provides an environment where the kids can feel normal. They don’t have to feel weird because everyone has cancer in their home.
I asked Michelle what specific advice she would give to parents who have cancer, and these were her suggestions:
How to help kids cope when a parent has cancer
Make sure your kids have an outlet for their feelings, even the “ugly” feelings – a safe place where they can talk about what’s going through their head without being shut down. (Counseling and group therapy are great for this)
If you do get a counseling for your kids, trust and confidentiality are of the utmost importance. The child needs to be able to say those things they’re afraid might hurt their parent’s feelings.
Allow them to feel their emotions rather than brushing them away.
Don’t try to fix everything. You can’t fix their emotions.
Ask them specifically what they are afraid of, the fear may take on different nuances at different times, and that will change the conversation.
The Camp Sparkle and Small Talk programs mentioned above are at Gilda’s Club Seattle. There are Gilda’s Clubs around the country, and while the specific offerings at each location may vary, the programs are available to cancer patients and their family members at no charge.
Michelle also works with young women with breast cancer, formerly serving as a meeting facilitator for the Young Survival Coalition.
I toyed with the idea of a photography show intermittently for a couple years, but something always stopped me. I couldn’t imagine working up the courage to approach someone about showing my work. I wasn’t sure my work was good enough.
I was scared – scared of both failure and success.
Then one day in the middle of a conversation with the owner of a coffee shop that I just adore, I took a deep breath and then blurted out a question that was something along the lines of “how do you select artists for your exhibits?” I can’t remember exactly how I asked, I could hear my pulse in my ears. But I chose well; the person I asked was one of the nicest people I know. By the end of the conversation, I had a show booked for October, nine months away at that time.
Of course, there was quite a bit of work left to do, but I managed to get it all done, and showed up October first to hang 25 pieces with the help of my unpaid intern:
she was a lot of help. [ahem]
I can’t express what it felt like to see my work up on the walls.
Even better, we had a reception for the exhibit, with live music, a wine tasting, tasty bites, and my friends showed up to support me. I had so much fun that I didn’t take any pictures during the party, and that never happens. I will always remember that party – especially when I think about doing something that scares me. To top it all off, I sold a bunch of pictures, too.
I have been invited to participate in Courage Night, an author event sponsored by the Young Survival Coalition where 5 young survivors of breast cancer will read from their books, followed by a book signing. Well, in my case, I will read from my blog. I’m beside myself with excitement about this event, and a little nervous. I hope all my friends in the Seattle area will come to support me.
I’m so honored to be included in this group of amazing writers.
I was also a little perplexed about how to gracefully manage the whole signing of books part at the end. It’s not like you can sign a blog. And the other authors are donating their proceeds to YSC… Finally, last night I got that little light bulb over my head. Why don’t I have some of my photos printed, and sell those? Then I’ll have proceeds to donate, and something to sign.
So which photos?
I picked a few, and I’m going to narrow it down again to a selection of four. Which ones do you like?
And here’s the flyer for Courage Night. If you’re in the Seattle area, stop by and say hi. I’d love to see you!
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